Amelia was born with Sturge-Weber which includes the port wine stain, glaucoma, and seizures and she has been blessed with all three. She experienced her first seizures at 5 weeks of age and had a stroke at that time. At 4:00 on Christmas morning of 2014, Amelia started having seizures. We drove to Children’s Hospital and she was admitted. To be truthful, I don’t remember for how long because this was the first of many hospital stays this year. I don’t even remember the number of times or the length of times. Just be known, it was a lot. She was eventually moved up to 12 meds a day given every 4 hours around the clock. After the last 16 day hospital stay, a panel of six doctors voted unanimously to recommend a hemispherotomy which is an operation to completely disconnect the affected (where the seizures originate) side of the brain. This surgery was done on Sept. 16th and she was home in 7 days! Other than a quick trip back to the hospital for an infection of the incision, she has had no hospitalizations other than laser surgeries which happen about every 2 months. She is weak on the left side and she has therapy about 9 times a week. She is now walking and talking, although we might be the only ones that can understand her! She still has a feeding tube because she cannot eat enough to sustain herself yet. 

 

We would like to take Amelia to the Vascular Birthmark Foundation Conference in Irvine, California in October of this year to learn about the latest techniques of laser treatments. In Dallas, she has to be put to sleep to do the laser. There is a new laser that is called “cool laser” that does require anesthesia and we would like to see if this would work for her. This conference is offering free evaluations.

 

The Vascular Birthmarks Foundation, with Dr. J. Stuart Nelson and the Beckman Laser Institute, will host the 2017 Annual VBF Conference and Clinics in Irvine, California on Saturday, October 7th. Patients and their families will spend the morning in educational sessions addressing the latest updates on diagnosis and treatment led by a faculty of the world’s leading vascular birthmarks experts. Daycare will be provided for younger patients and attendees so that older family members can remain focused on the content.

 

In the afternoon, special sessions and family support groups will be held in conjunction with one-on-one clinical appointments at the nearby Beckman Laser Institute; transportation is provided between the two venues. The clinics for hemangiomas, port wine stains, vascular malformations, and syndromes associated with vascular birthmarks bring patients together with panels of renowned experts to receive a diagnosis and treatment plan that might otherwise be impossible to obtain. Orthodontal exams, dental exams (tentative), and laser treatments (tentative) are being planned. 

 

Dr. Anne Comi is the director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute. We will meet with her and follow up with her concerning the medication following the hemispherotomy.

 

The $100 per patient conference registration fee includes all education and special sessions, clinic appointments, breakfast and lunch for the patient and accompanying persons, and daycare (if needed).

 

After the conference, we would like to go to Disneyland for two days if that would be possible.